As you can imagine the 'cause of death' for my family was all GSW to the head. The coroner did not automatically do the neuropathology exam for the presence of AD plaques and tangles.
I met with the doctors and asked if they would please do so such that I could have a solid biological conclusion for what I went through during the last 6 years. (During life, none of the doctors wanted to go out on a rope and use the AD word, but they were happy to write prescriptions)
Well the results are in: Wife - AD plaques and tangles - No surprise but now I can be 1000% sure I wasn't dreaming. Father - AD plaques and tangles - Suspected for the last few years, now confirmed. I was correct.
Mother - AD plaques and tangles(!) YIKES! This is a surprise!!!! She had NO outward signs or symptoms. Mom had intractable arthritis pain, but I detected no memory issues. . . . . wow . . . .
Dad was 84 Mom was 80 The statistics say that over the age of 80 you have a 50% chance of developing symptoms of "dementia" (exact causes not specified in the stats)
I Guess at age 55 I need to 'carpe diem' and make sure I start living and not put things off. Perhaps if I can just do enough crossword puzzles and drink enough coconut oil . . . ??? Jim
Jim - I think of you often and what an unimaginable time you have survived. I am glad that you got the results confirming what you "knew" already in your heart. I wish for you a peaceful time of finding Your life again. May there be much happiness ahead.
Jim - I am so glad that you were able to convince the doctors to do the exam for the presence of AD plaques and tangles. Despite you being 99.9999999999% sure that AD was the real cause of death for your parents and DW, without the exam, there would have always been that little niggling doubt. Now you are sure, your suspicions have been confirmed, and you can move on. Is it possible that your DM's AD was masked by medication she may have been taking for her arthritis pain?
I think anyone who has been a caregiver for this horrible disease should "seize the day" and make the most of life, if only to make up for what we are losing/have lost of our lives in looking after our LO's. Even if we love our spouses dearly, there are so many sacrifices to be made.
So go sip a Pina Colada, lather on some coconut oil, and sit on a beach doing crossword puzzles and Sudoku and start living each day to the fullest. :-)
Jim--please research the "nun's study" on AD. Sorry, I'm not sure of the real name of the study, but it was conducted nationwide and followed a group of nuns over a long period (perhaps 30 years). The results showed that some of the participants with plaques and tangles had shown AD symptoms, but SOME HAD NOT. Consequently, this is why the cause of the disease is still unknown and scientists don't know if they are a causal factor or if they are the brain's protective response to some other cause. What I'm trying to say is that although your Mom's autopsy showed plaques and tangles, she may have been like the nuns (whom some of were in their 90's) who had those in the brain but showed no signs of AD.
I now think any death certificates should now say that the primary cause of death was_______ and contributing causes are______.______.______ etc.
My Mother's did say Alzheimers as did my uncle's who also had a brain autopsy. He had no other known medical issues such as diabetes, vascular disease etc.
Because my DH has AD and his Xwife does too, I think it will be very important for the girls to know what health issues are in their genetic codes....DH has severe vascular disease, has several AO exposure caused diseases as well....their mother is otherwise healthy but for AD. But in the DH family, there is a hx of heart disease and diabetes now and AD as well.
In my case, having been an orphan I am up for grabs....and if you are born to drown, you will never hang was always my DH's motto so that has to be mine as well.
Jim, I am glad you now know for certain about your wife and father. I do think it helps to have the medical confirmation of the disease because it reaffirms our caregiving and sacrifices. As Marilyn says, it is possible to have the tangles and plaques without symptoms so hopefully your mother did not experience dementia. I hope this brings a form of closure for you and you can begin to seize the day.
Marilyn beat me to it...one avenue of speculation is that some brains--despite the presence of P's and T's--have managed to develop enough alternative neurological pathways that they are able, for a time, to work around obstructions, thus delaying symptoms for however long.
On the other hand...maybe, as they say, it's not the plaques and tangles at all--they may be just a concomitant sign.
You have been through so much. I hope that you will find some joy in life somewhere down the road. As for the here and now, I am all for that piece of coconut cream pie.
There is too much about AD that is not known, better to just enjoy life. I have told my brother & sister about the findings but they were not interested. I dont think they understood what I was saying. Oh well . . . their problem.
Excellent suggestion! I feel much better after a coconut cream pie than after the big glass of coconut oil :-) Thanks everybody.
There comes a time when we have turned every tea leaf over and have learned what there is to know about some particular thing. Spending more time going around the track without learning anything new becomes more like exercise than anything else.
Ultimately, the issue about ourselves may be that with the main elements of our own continuity gone; we are disconnected for a time.
It's here I think the doers and the experiencers have an advantage and the thinkers and dwellers may not. Neither my wife or I wanted children to change our friendship and while we had the equipment, we never felt that was an obligation. And while we were fortunate in the depth of the many friendships we had, they were never more than outside the second gates of the city.
The day came where I realized I must reinvent. I can find solace and meaning among my friends and family; but, I can't move in. I won't replace meaning with activity. I have to find activity that has promise of growing into meaning. Other's may not see it that way and face their own blend of issues.
The events of our lives, however different they may be from others, are still the triggers that activate what we do and become. Look back or read about anyone's life and we see that is a universal truth.
My wife is going on a bus trip to Stratford tomorrow oblivious of anything but the sunshine on her face, the hopefully familiar feel of travelling somewhere, and an ice cream. And I will continue wondering where I want to live and what I want to do with my sorry butt. When asked what I wanted to be when I grew up, I never had an answer and I don't now.
But my wife, like your wife, had the person around her she would have wished when this disease appeared. And on my journey now the only travelling companion is me. I'm pretty interesting. I'm not close to that interesting. But my travelling companion did say something good recently, or perhaps I heard it for the first time. I can do anything I want. I'm 62 and coming up on 10 years of retirement and my dues are fully paid. This isn't what I wanted; but, I only ever got anything good in life by going for it and I seriously doubt that has changed because of what happened to us.
Ethically and morally you did the right thing by sharing the autopsy findings. This discovery could have allowed your siblings the benefits of future financial and legal planning. If they have children, I hope that they will reconsider and share this valuable genetic information.
When my FIL died after 20+ years of AD, his brain and eyes were donated to research. I would think they would send a report but have never heard if they did. After this thread was started I sent an email to my BIL asking if he ever got results. I doubt I will ever hear from him, but had to try. It has been 3 years so I think he would have heard something.
Surprising I heard back from my BIL. Their dad was confirmed to have Alzheimer. Have always wondered why it progressed so slowly but will never know. He also told me their sister is stage 5 which is about where my hb is - except I think she might be later stage 5/closer to 6 than my husband is.